Tuesday, March 26, 2013

Some Honest Mama Talk

I’ve been poking around on other China cleft lip/palate adoption blogs lately, and other adoption forums too, hungry to read about other families who are walking the same path we are. I’ve mentioned before, at least once or twice, that this path of adoption is both full of community and support (as I wrote about in my last post) and also somewhat lonely and isolating. We can’t look around and see other kids like Matthew who are developing in a “normal” way for his situation. Yes, there are other families who have children with a cleft lip and palate, and we feel grateful for the friendships we’ve forged with other families who are walking a similar path.

But each adoption is different—each kid with a special need is different—and at this point in our journey, we are also so aware of the impact the orphanage had on Matthew. For 18 months, our boy basically lay in a crib without much interaction at all. This means that while a normal infant in a family developed alongside plenty of snuggles, kisses, songs, words, and facial expressions, Matthew probably likely stared at the cold boards of his crib bottom or the white walls of the room where he lay. It’s not much stimulation for a little person who has just entered the world. And we are seeing the effects of that lack of stimulation in very significant ways right now.

These days I spend my time flip-flopping between feeling so proud of Matthew for all that he is accomplishing and feeling impatient with how slowly his progress is coming along. Everyone we talk with and run into wants to know about Matthew—how he’s doing, how his mouth is healing, and if he’s talking. I have to admit I’m a little tired of that last question, because my answer is still NO. No, he isn’t talking.

I’d rather they ask me what he IS doing—what he’s learning, how he’s attaching and continuing to settle into our family—because I do have many wonderful things to share.

I thought it might help other adoptive families reading our blog, and our friends and family who follow our story here, if I laid out a couple things for all of you:

First, we’ve been encouraged to think about Matthew’s “homecoming” as the start of his developmental life. He’s been home just over nine months, which means in many ways that developmentally he should be at the level of a nine month old baby.

To top that off, when he had his palate repaired in late November, we learned that he had basically NO hearing in either of his ears. So those first five months, from June to November, he wasn’t able to develop his language or speech at all because he couldn’t hear a thing. His palate repair was four months ago, which means that in terms of speech and language development, he’s about the age of a four month old.

Nine months in physical development, four months in language development. Those of you who know Matthew will agree that he’s definitely farther along than these developmental markers. In fact, we had another assessment today by our speech therapist, and based on her results, she said he’s about 23 months in gross and fine motor skills, and about 10 months in speech and language (all for a boy who is, in total, just 27 months old).

This is good news. He’s gained a lot of development over the past few months (since starting speech). Our first evaluation plotted him at 4 months for speech and 16 months for gross and fine motor skills. So he’s developed along at rapid pace, almost doubling his development in three months.

I wrote these results in my mind and on my heart today, to remind me when I begin to feel discouraged that our boy is learning and growing in so many ways.

Speech therapy isn’t just about making the mouth shape the consonant and vowel sounds. It’s also about developing all those pre-linguistic skills of play and interaction. These skills weren’t developed in Matthew when they normally should have, so he’s working hard to catch up. He’s started signing, which is a blessing because he can finally start telling us when he wants something.

The biggest gift to us right now is the fact that Matthew has attached so beautiful to our family. Whenever I start to feel discouraged, I think about how life would be if he talking but refusing to attach to his parents. It would be incredibly difficult to parent a child with an attachment disorder—and I have the greatest respect for those of you who are facing this challenge.

Sometimes I wonder how much differently it feels to parent Matthew than to parent any other child with a special need—or if it’s really different at all? Since the attachment piece is in place, we are dealing with advocating for his needs, supporting him, determining how much to expect and how much to let go. Parents who have kids on the whole spectrum from ADHD to a severe genetic cognitive delay know the challenges of these kinds of tasks. I now understand the strange looks from people in the grocery store—although unlike some parents I know, I haven’t yet learned to ignore them. Our boy is still young and quite cute (at least we think so), which goes a long way for us in terms of helping him appear endearing to other people.

However, part of me just thinks, “who cares?” It’s not like strangers in the grocery store know our story, or Matthew’s story. He’s doing such a good job learning and growing—and yes, he’s delayed in some things very common for adopted kids with cleft issues. But the beauty of it is that we are here to support him through it all. We are here to advocate for him, to help him learn, and that’s our job.

I’ve been feeling very emotional about all this for the past many weeks now—emotional to the point of tears several times. Sometimes I feel guilty or ashamed when I am frustrated with Matthew and his slow development—because I know that among all the things he needs, one of the things he needs MOST is a family that is supporting him through every step.

And while this isn’t exactly what I was expecting with this adoption, I was expecting it to be hard—I just didn’t know how. We welcomed Matthew into our lives and our family aware of the fact that he would bring needs with him—that we would use some of our best energy helping him grow and learn.

And I could make a very long list of all the ways he has grown and changed and developed, especially over the past four months since his palate repair, but I won’t. I will let this post be as it is—telling the truth of this moment in my heart and in our family and for Matthew. Tomorrow, perhaps, it will be a different reality. When he says his first word, my blog post will be FILLED with elation and joy—and the long-awaited reality of verbal communication for our son.

But until that day, I will see each and every moment with him as the gift that it is, and try to cling to my best enthusiasm and hope for him, which is really all he needs from me.

Matthew and big brother Sam, one of his favorite playmates!

Wednesday, March 20, 2013


I have been so aware, recently, of the many people rallying around Matthew during this huge time of learning for him. We celebrate each of his milestones enthusiastically at our house, but we are joined by a whole host of people who are helping him grow alongside us.

People like Anaga, our speech therapist, who literally gets tears in her eyes every time Matthew does something new and amazing. She’s regularly saying to me, “that’s beautiful—that’s SO beautiful.” She did this the first time he signed “more” to her during a session, or when he came up and grabbed her hands and pulled her to the other side of the room. She’s one of his biggest cheerleaders, watching him learn and grow each week.

Then there is the amazing staff at the Acorn Learning Center where Matthew goes to preschool two days a week. Three teachers are with him on Wednesdays and Thursdays, not to mention a whole group of amazing student Early Childhood Education majors (both female and male!) who spend time with both my boys at preschool. It seems like every day, when I come to pick them up, one of the teachers has something amazing to tell me about Matthew. Along with us, they are watching him develop and learn—and it’s thrilling to them. Their excitement is contagious, and is a huge encouragement to us on a journey that often feels snail-slow at times.

And finally there is my family, especially my parents who live down the block and care for Matthew every Wednesday afternoon. They delight in his growing and learning. They read books to him, play games, talk to him, take him outside on walks and for playtime in the backyard, feed him, and carry him around. And they are witness to Matthew’s development and share all his new “doings” with enthusiasm when I come to pick him up.

It takes a village to raise a child. I know some people think this line is cliché, overused, and they might be right. But the sentiment is dead on: There is no way we’d be doing all this with Matthew if we didn’t have the support of people around us. But these days, even more than support, it’s the shared enthusiasm and the community of cheerleaders who are most important. Important to us, yes. But even more so important to Matthew. He will grow up knowing that there is a wide circle of people around him who believe in him, who are excited to see him learn new things, and who will be beside him no matter where life leads.

What a gift this is for all of us.

Here is Anaga, doing speech therapy with Matthew. It's ball play time!